Skyler's New Beginning

Since December 2016 Skyler had been in and out of the hospital. In March of 2017 he was admitted again and he's not been discharged. This disease, erythropoietic protoporphyria, was destroying his liver. He was placed on the liver transplant list soon after his admission. Unfortunately, at the end of April he developed MSSA, a staph infection that caused a pneumonia, and required intubation. He remained on a Ventilator until October 2017. Because he was now on life support he was moved up the transplant list and received a liver May 11th 2017. After the transplant he remained unresponsive despite stopping all sedating drugs. He was experiencing axonal neuropathy. His entire body was paralyzed. It was days before he could even flutter and eyelid at us. This was something that has not been widely documented because of this happening to so few patients with his disease. It took the doctors a good bit of time to even figure it out.  While all this was going on last summer he lost his father as well. Its been a very long and bumpy road. Once he finally started getting movement and over the ventilator we decided to move him to a hospital that could better take care of him and meet his needs. This year on March 8th we were flown in to Cincinnati Children's Hospital. It was discovered the source of some of his pain was caused by a vitamin D deficiency and developed osteoporosis. This resulted in some spinal compression fractures that set us back a bit in his rehab.  Hes slowly regaining his strength in muscles hes not used in a year. He'll need a bone marrow transplant to be cured. We are walking a fine line between getting him as healthy as possible to do well with the transplant while monitoring his liver every other day to make sure it stays protected.  Its going to be such a long stretch of obstacles the next several months to a year. Thank you to everyone who donated and prays for us. 

Also, if you would like to learn more about this disease go to http://www.porphyriafoundation.com.